By John Bombatch
XENIA — She walks with a slight limp, and her joints are sore more often than not, but Jasmine Tolbert, 25, is determined to help others who may not even know about a disease called Lupus. If she can make people aware of the baffling disease and its symptoms, maybe she can help them get the help and medical assistance they need.
And so, along with more than 30 others who will be out on the floor right along with her, Tolbert will participate in what is being billed as the largest Lupus Zumbathon in Southwest Ohio, from 1-3 p.m. Saturday, April 30 in the Xenia High School gymnasium.
For those who’ve never danced the zumba, it’s a Latin-inspired, calorie-burning fitness party where participants follow easy dance steps to a musical beat. Tolbert, sore joints and all, will be right out there dancing and raising funds for the Greater Ohio Chapter of the Lupus Foundation of America.
“That’s one of the funny things, whenever I talk to other lupus patients about doing a Zumbathon, because it’s nothing but moving,” she laughs. “And that’s very hard for us lupus patients, because our energy might not be up, and our joints might not be working on that day. But it’s fun! As opposed to doing a charity walk, where everybody spreads out and kinda goes at their own pace, everyone will be in the same room enjoying the event together, having fun, listening to music, talking and getting information. And it’s another way for us lupus patients to get up. We may not want to, but it’s a way for us to keep those joints moving and flexible.”
Initially told by a doctor that she had a form of rheumatoid arthritis, Tolbert later learned two years later that she had a form of lupus, while a high school freshman at Xenia.
“They didn’t tell me much, basically that it was an autoimmune disease. That means that your body is fighting itself,” Tolbert explained. “That was pretty much it. They said ‘Here’s your medicine’ and that was it. I didn’t really take it seriously. I was achy in my joints, but I’d been living with it for two years. It just became a new norm for me.”
The Lupus Foundation of America describes the disease as ‘an autoimmune disease that ravages different parts of the body. … It can damage any organ or tissue, from the skin or joints to the heart or kidneys.’
Tolbert lived the normal life of a high school student. She played junior varsity basketball, varsity tennis and ran track. She went to dances and hung out with friends. Then during her senior year, shortly after giving birth to her daughter, Serenity, who’s now seven, Jasmine began experiencing cognitive issues. She had a seizure in 2011 that left her hospitalized for several days.
Two years later, and roughly two months before she was to graduate from Wright State University, Tolbert had another seizure. This time, she spent eight days in a hospital’s intensive care unit. Her doctors told her that the seizure was the result of lupus, which was induced by stress.
Tolbert left the hospital, lived the life of being a college grad student and Destiny’s mom. Two years later, she earned her master’s degree at the University of Georgia.
She returned to the Xenia area after graduation, and this past February she had yet another ‘flare,’ as the seizures are called. Again she spent eight days in a hospital, this time at The Ohio State University.
“On top of telling me that the seizure had been caused by lupus and that I still had to maintain my stress levels, they also told me that I had what was called Aseptic Meningitis, where the lining of the brain swells up. So that’s pretty much what was happening the last two times as well,” Tolbert said earlier this week.
There’s only one available drug approved by the U.S. Food and Drug Administration — called Benlysta — that has been developed to specifically treat lupus. Tolbert hopes Saturday’s Zumbathon will not only bring awareness of the disease to others, but that the event can help raise funds for further research and development specifically to treat lupus.
“(Benlysta) costs over $1,000 per infusion and you have to take it once a month,” Tolbert said. “And it only helps 20 percent of those people who take it. So hopefully we can raise some money to help the Lupus Foundation create more medication that works for those of us who deal with lupus every day.”
The drug helps Tolbert, but she wants a drug developed that could help the other 80 percent as well. Interested dancers can register at the school for $20. Tolbert and her friends will be on hand, too, smiling and dancing the day away. All for a good cause.
For more information about lupus, call the foundation’s toll-free number: 888-NO-LUPUS.
